Do I NEED a second opinion?

pepper43

I've been told by several folks after receiving my IDC diagnosis that I should get a second opinion on stuff. I'm already just overwhelmed, exhausted and scared. I trust that my breast surgeon is competent (not to mention compassionate) and has referred me to a reputable oncologist.

Did you get a second opinion? Why? Should you always get a second opinion? And again, what are the reasons?

Carlsoda

I haven't, but I am tempted to get a second opinion for radiation. I know I need it, but I am worried about heart damage and no discussion about breathing techniques to reduce the risk.I am taking the weekend to decide (I had the simulation but not starting until next week sometime) I am also concerned about the chaotic atmosphere of the office! Trust your inner instincts, if you feel you are in good hands then go with it. If something is nagging then go for a second opinion.

farmerlucy

I did not get a second opinion. I trusted my docs and felt comfortable with them. I did have some questions about the pathology results and was going to get a second opinion. Instead I called MY pathology department and they took another look at my slides and answered my question. I would seek a second opinion if I had question regarding treatment and such. Many of my questions were answered via this website. I did not feel the need to get further opinions. Take care.

Reckless

I got the 2nd opinion because the place where I was diagnosed did not want to do lumpectomy with radiation. Plus, they are out of the way for me compared to other highly reputable cancer centers. But at the end, I went with this 1st place - even though 2 other places were OK with LMX+rads, they still recommended BMX due to BRCA2+. And I really liked the BS at the 1st place. I agree with carlsoda's recommendation.

ElaineTherese

I didn't get a second opinion because my original team was suggesting a fairly standard regimen for my stage and type of cancer. I didn't find my doctors' plan to be unreasonable or much of a departure from what any woman with Stage IIIA triple positive cancer would get. Of course, I should note that -- other than cancer and high blood pressure -- I am a healthy person with no pre-existing conditions. So, my case wasn't all that complicated. For someone who had health problems, I probably would have been more cautious and have questioned the plan more.

hyphencollins

Hi -- I got a second opinion regarding chemo not for surgery, reconstruction or radiation. I agree it is overwhelming at diagnosis. I had multiple MRIs, ultrasounds and biopsies and I just couldn't deal with another appointment. However, I did trust my providers. After surgery when there were a few unexpected results (positive node, intermediate oncotype, and positive margins) I did seek a second opinion at Dana-Farber. They did recommend a different treatment from my MO BUT also let me know that either treatment (AC-T or TC) was a good choice and that they had a lot of confidence in my providers. So -- my second opinion did lead me to change my treatment regimen but also reassured me and I stayed with my original MO (who was really opening and encouraging about the second opinion). Dana Farber's pathology also graded my cancer differently (grade 2-3 vs grade 1), but since I had the oncotype, they didn't seem concerned. (As an aside, my original pathology was done by MGH pathologists so I was kind of surprised that there was a discrepancy since the grade 1 was scored 1-1-1 -- it wasn't borderline 2 at all! It wasn't like either one was a local lab!). I didn't seek a second opinion with rads --but my RO encouraged me to do so and even said that Dana-Farber probably would recommend radiation for the internal mammary nodes because he felt they would be more aggressive in my situation. So-- long story short -- I don't think it is always necessary to get a second opinion but it can be helpful and reassuring. Good luck!

gardengypsy

petrinah~

Regarding a second opinion, the answer is, YES.

The only thing I have to go on is my case, yet I am sure that a second opinion is considered best practice all-around. Although you may find that the treatment plan is similar, it's so important to confirm it. Physicians usually appear very self-assured, and when we are vulnerable, we want to believe every word they say.

While approaches to our cancer may seem "standard" to some, I found that not to be the case. My first team, at a major university medical center, was incorrect regarding the rate of growth, and advised a slower course of treatment. My second opinion, at Dana Farber, advised me to follow a more aggressive plan. The pathology report, which indicated a quickly growing cancer, confirmed their opinion.

If you would like specifics, please feel free to message me.

~gardengypsy

ChiSandy

I didn’t seek a second opinion for my treatment plan, because my surgeon, MO & RO all have excellent reputations and are at a topnotch breast & cancer center (Kellogg NorthShore) which is part of a major teaching (U. of Chi. Med. School) hospital (NorthShore Evanston). I knew I didn’t want mastectomy and understood that I needed radiation as a result (and partial-breast, it turned out); and that my tumor profile required endocrine therapy. But I am thinking of getting a second opinion as to osteoporosis prevention. My pre-AI DexaScan showed osteopenia (mild in spine & legs, bordering on osteoporosis in hips). My MO wants me to take Zometa infusions starting in Aug. but I’d prefer Prolia. My PCP, given my GERD history and increasing reports of horizontal femur fractures on bisphosphonates, suggests I take calcium citrate, magnesium, D3, and K2 plus weightbearing exercise (ballistic is best, but as I have knee implants and a tibia pinned-together with hardware, anything involving jumping or impact is contraindicated lest I shake my implants loose and require revision surgery with all its attendant risks). A third doc--an osteoporosis specialist at U of C Hosp., says “doing nothing is not an option.” And I just saw Dr. Lani Anderson’s “Strong Bones, Long Life” PBS special--she warns that bone-strengthening drugs merely prevent osteoclasts from removing old weak bone cells rather than help build new strong ones--so you end up with old bones that break anyway. (She also didn’t address having to deprive the body of estrogen--to the contrary, she advocates retaining as much of it as possible, which is of course terrible advice for those of us with ER+ tumors. I just bought the Kindle version of her book and am going to see if it addresses advice for AI users. Caveat is that she’s a chiropractor, not a DO or MD, though she is a densitometrist and on the board of the American Society of Densitometrists).

I have no argument with taking an AI for 5 years but given the relatively small benefit of recurrence-reduction (and NO difference in overall survival) of continuing it for 10 years or even a lifetime, I think I will stop at 5. I also want to see about lessening the rise in LDL-C and triglycerides that AIs indisputably cause, and the corresponding rise in glucose and a1c caused by the statins necessary to lower harmful cholesterol (especially in light of recent research showing that sometimes ER+ cells adapt to estrogen deprivation by manufacturing their own supply from serum cholesterol....but the body still needs some cholesterol). My MO refuses to prescribe either statins or metformin, saying that the data isn’t in yet and that I should manage lipids & glucose with “lifestyle changes.” (Already on a low-carb diet to reduce both phenomena, and there’s a limit to the amount and nature of exercise I can do).

So I’ll probably seek a second (or third) opinion on bone drugs, statins & metformin.

BrooksideVT

It never occurred to me to seek a second opinion. My cancer was stage one, grade one, ER+, HER-. As far as I was concerned, I wanted it out, and the sooner the better. By the time surgery (lumpectomy) and rads were over, I'd realized I was being treated at an NCI comprehensive care hospital. My oncotype was low, so chemo was contraindicated. The balancing acts of choosing lx vs. mx, and chemo vs. no chemo, seemed pretty straightforward, with my decision based on statistics. Neither decision was easy, but there did not, and do not, appear to be any treatment gray areas.

Should I have a recurrence, then I suppose I'd collect a couple of alternative opinions from other NCI hospitals in the northeast.

BarredOwl

Hi petrinah:

Some people have a lot of confidence in their team (especially those at top-notch treatment centers), may feel very comfortable with the quality of the care and advice they are receiving, and may reasonably choose to rely on that advice. A second opinion is not a requirement, but they can prove to be quite valuable in a number of ways.

To the extent that diagnostic work-up and treatment plans always include some measure of judgment, a second opinion provides an opportunity to confirm the soundness of that judgment and of the advice received. For example, have the imaging results and pathology slides from all biopsies and associated tests been accurately interpreted and reported? Was the diagnostic work-up adequate? Or should additional imaging (e.g., MRI) and/or biopsies of other areas be requested? The imaging data and info from various reports shape the recommendations of the surgeon re surgical options and of the medical oncologist re systemic treatment options (e.g., endocrine therapy, adjuvant (post-surgery) or neoadjuvant (pre-surgery) chemotherapy and/or HER2-targeted treatments). Did the surgeon and medical oncologist take into account all relevant details in their recommendations? Should one be referred for genetic counseling and possible genetic testing (which could impact recommended surgical plan)? A second opinion prior to initiating treatment can provide a sort of check on these types of issues.

A second opinion also provides a second opportunity to discuss your test results and diagnosis with professionals, and to understand how they support the recommended treatment plan, and to ask more questions about what the proposed surgery entails, possible further axillary node assessment, associated risks of lymphedema, etc.

The second time around, you may understand and absorb a lot more. Some doctors are much better communicators than others, and some are a better fit to the style of doctor/patient relationship that you prefer. A second opinion allows you to interview another potential team.

To the extent that the second opinion confirms the first, it gives you added confidence in your initial diagnosis and treatment plan. If it differs in a material way, this is important information to have. You may choose to be treated by either team regardless.

In my case, I received a recommendation for unilateral mastectomy due to extensive disease. I sought a second opinion to confirm that advice, and an independent review of all imaging and pathology slides. The imaging and pathology findings were confirmed insofar as they went. But further mammography and biopsy were recommended by a radiologist who judged that a suspicious area required more investigation. This led to the diagnosis of bilateral breast cancer, and a big change in treatment plan. I sought treatment at the second opinion hospital. Sometimes, one is not aware of the fact that there is a gray area or bad judgment call.

If you choose not to seek a second opinion, at a minimum, please obtain copies of the reports from all imaging (e.g., mammography, ultrasound, MRI) and all biopsies, along with ER, PR, and HER2 test results, so you can confirm what you have been told about your diagnosis with printed results bearing your name. (Trust, but verify).

To learn more about the second opinion process and various time-points at which one might pursue one, see this page and the related sections (listed in menu at upper left):

http://www.breastcancer.org/treatment/second_opinion/why

If of interest, ask your team about recommended time to treatment, and whether you can safely take the time to obtain a second opinion.

Best wishes as you move forward, whatever you decide.

BarredOwl

pepper43

Thanks so much for the feedback! Incredibly helpful. I think I'll hold off on second opinion until after definitive course of action is set (and whether I feel equally confident in the oncologist she's referred me to). So glad I found these forums!